A picture is worth a thousand words

I am sure you have heard the phrase “A picture is worth a thousand words”, but not all of those words are a true reflection of the picture.  Those of us who suffer from one or more chronic illnesses are often unfairly criticized and judged.  If we are happy, we are accused of being”high” or not as ill as we claim to be.  If we are sad, we are accused of being depressed.  If we are experiencing a period of pain that keeps us from leaving the house, we are told that we need to get out.  When we do get out those same people doubt the severity of our conditions.  If we don’t share our story we are accused of hiding something.  Those who only share the hardships of living with a chronic illness are accused of being attention seekers and those who only share their good moments are accused of not being sick at all.  Then there are people like Yolanda Hadid from RHOBH (Real Housewives of Beverly Hills) that share both, the good and the bad, that really drives people crazy.

I recently watched season 6 of RHOBH on Hulu.  First I want to applaud Yolanda for having the courage to share her battle with Lyme Disease with viewers.  She doesn’t need the money, she could have easily declined to continue filming, but instead she made an invisible illness visible to the whole world. For this she is a chronic hero in my book.  The behavior of her so called friends could be blamed on the producers creating drama, but the sad truth is that their shameful behavior is exactly what most of us with a chronic illness face everyday of our lives. Her “friends” not only doubted her diagnosis, they also discounted the severity of her condition.  She was accused of having Munchausen syndrome (a condition in which someone fakes an illness for attention).  Some said she was probably just depressed.  Others couldn’t understand how she could be as sick as she claimed when she would post pictures of herself on vacation or having lunch with friends, and this my friends is the subject of this post.

Her “friends” said that her Instagram posts were confusing.  They didn’t understand how she could post a picture of receiving a treatment one day and then one of her smiling and enjoying life the next.  Instead of talking to her they chose to gossip about her all season long.  They assumed that the happy pictures represented a healthy moment.  I can understand why they would as typically when an otherwise healthy person becomes ill, they aren’t out enjoying life until they are healed.  But waiting is not an option for the chronically ill.  For those unaware, chronic means long lasting-without end.  We must embrace every moment of joy or life that we possibly can, otherwise we would never live at all.  Unlike most people we are not going to get better in 6 weeks, 7 months, or in 8 years.  And in most cases our conditions will only get worse as time goes by.  The chronically ill live different lives compared to our healthy friends and family.  The amount of time we spend outside of our bedrooms, houses, or doctor’s office is minimal.  Every outing comes with a price tag.  The payment for enjoying the simplest of normalcy includes a spike in physical pain, fatigue, guilt, remorse, and more.  Increased pain and fatigue result in spending more time in bed.  We feel guilty when the fallout of a simple moment like when having lunch with friends causes us to cancel other plans.  Sometimes our pain is so intense after an outing that we regret ever leaving the house at all.

What bothers me the most about this confusion is that these women would most likely be singing a different tune if Yolanda had been diagnosed with a terminal condition.  If her doctors had said you only have a year left to live, those women would have been cheering her on and encouraging her to go out and grasp every moment of joy that she could.  They wouldn’t have told her to stay in bed and wait until she was healed before going on vacation.  They wouldn’t have suggested that she wasn’t dying when she chose to go out to lunch or spend time with her husband.  Even more annoying is that her “friends” opinions were solely based upon their perception of a picture. If they were to have spoken to her instead of gossiping, she could have shared what was really going on.  Instead of thinking that she must not be that sick if she was able to pose for picture with her mother on a yacht, they may have learned that the few minutes it took to stand and smile caused her to spend the rest of her day in bed.  Or that it took all of her strength to attempt appearing normal for her mom, even if was just for a moment.  Just because you see someone with a chronic illness smiling, it doesn’t mean that they aren’t in pain.  My pictures from Disneyland only tell a portion of the story.  Yes, I am enjoying that moment, but what you don’t see are my bowels being twisted and pulled in unnatural directions.  You don’t see my physical pain.  Most importantly you can’t see what happened afterwards.  You didn’t witness how I cried alone in the restroom because my body wanted to crawl back into bed while I just wanted to have one “normal” day with my family.

A picture may tell a thousand words, but those words are meaningless and often misguided if the person telling the story doesn’t have the whole story.  Instead of creating a distorted storyline for the picture, talk to the person.  The chronically ill should ever be discouraged from going out and enjoying life. My prayer this holiday season is that my chronically ill friends will enjoy the season and do what they can without worrying about their friends and family doubting their illness.

Wishing you a day filled with many reasons to smile,

The Disabled Diva

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